唐氏综合症调查中成功（和不成功）的招募方法和参与者的流失。

IF 2 4区医学 Q1 EDUCATION, SPECIAL

Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2025-03-01 DOI:10.1352/1944-7558-130.2.131

Mikayla Shaffer, John Patrick T Co, Karen Donelan, Brian G Skotko, Amy Torres, Jonathan P Winickoff, Stephanie L Santoro

{"title":"唐氏综合症调查中成功（和不成功）的招募方法和参与者的流失。","authors":"Mikayla Shaffer, John Patrick T Co, Karen Donelan, Brian G Skotko, Amy Torres, Jonathan P Winickoff, Stephanie L Santoro","doi":"10.1352/1944-7558-130.2.131","DOIUrl":null,"url":null,"abstract":"We recruited caregivers of individuals ages 0-21 with Down syndrome (DS) to complete an electronic survey. Multiple recruitment sources and methods were used. From 2023-2024, we received 542 valid, complete survey responses. We found the most success with use of DS affiliate organizations, the DS-Connect® contact registry for DS, and outreach to DS clinic patients. Of those who started the screener, 1,569 people screened in and were eligible; of those eligible, 730 (46.5%) consented. We experienced bots and fraudsters despite efforts to minimize those respondents from the outset. We present lessons learned in surveying caregivers from a low-incidence medical condition, with focus on our experience with invalid respondents, to inform other researchers conducting survey research related to genetic syndromes.","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"130 2","pages":"131-145"},"PeriodicalIF":2.0000,"publicationDate":"2025-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12243944/pdf/","citationCount":"0","resultStr":"{\"title\":\"Successful (and Unsuccessful) Recruitment Approaches and Participant Loss in a Down Syndrome Survey.\",\"authors\":\"Mikayla Shaffer, John Patrick T Co, Karen Donelan, Brian G Skotko, Amy Torres, Jonathan P Winickoff, Stephanie L Santoro\",\"doi\":\"10.1352/1944-7558-130.2.131\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"We recruited caregivers of individuals ages 0-21 with Down syndrome (DS) to complete an electronic survey. Multiple recruitment sources and methods were used. From 2023-2024, we received 542 valid, complete survey responses. We found the most success with use of DS affiliate organizations, the DS-Connect® contact registry for DS, and outreach to DS clinic patients. Of those who started the screener, 1,569 people screened in and were eligible; of those eligible, 730 (46.5%) consented. We experienced bots and fraudsters despite efforts to minimize those respondents from the outset. We present lessons learned in surveying caregivers from a low-incidence medical condition, with focus on our experience with invalid respondents, to inform other researchers conducting survey research related to genetic syndromes.\",\"PeriodicalId\":51508,\"journal\":{\"name\":\"Ajidd-American Journal on Intellectual and Developmental Disabilities\",\"volume\":\"130 2\",\"pages\":\"131-145\"},\"PeriodicalIF\":2.0000,\"publicationDate\":\"2025-03-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12243944/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Ajidd-American Journal on Intellectual and Developmental Disabilities\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1352/1944-7558-130.2.131\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q1\",\"JCRName\":\"EDUCATION, SPECIAL\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Ajidd-American Journal on Intellectual and Developmental Disabilities","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1352/1944-7558-130.2.131","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"EDUCATION, SPECIAL","Score":null,"Total":0}

引用次数: 0

摘要

我们招募了0-21岁唐氏综合症（DS）患者的看护人来完成一项电子调查。采用了多种招聘来源和方法。从2023年到2024年，我们收到了542份有效、完整的调查回复。我们发现，使用DS附属组织、DS- connect®DS- connect®联系注册表以及与DS诊所患者的联系是最成功的。在那些开始筛选的人中，有1569人筛选并符合条件；在符合条件的人中，730人（46.5%）表示同意。尽管我们从一开始就努力减少这些受访者，但我们还是遇到了机器人和欺诈者。我们介绍了从低发病率的医疗状况中调查护理人员的经验教训，重点是我们对无效应答者的经验，以告知其他研究人员进行与遗传综合征相关的调查研究。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

查看原文本刊更多论文

Successful (and Unsuccessful) Recruitment Approaches and Participant Loss in a Down Syndrome Survey.

We recruited caregivers of individuals ages 0-21 with Down syndrome (DS) to complete an electronic survey. Multiple recruitment sources and methods were used. From 2023-2024, we received 542 valid, complete survey responses. We found the most success with use of DS affiliate organizations, the DS-Connect® contact registry for DS, and outreach to DS clinic patients. Of those who started the screener, 1,569 people screened in and were eligible; of those eligible, 730 (46.5%) consented. We experienced bots and fraudsters despite efforts to minimize those respondents from the outset. We present lessons learned in surveying caregivers from a low-incidence medical condition, with focus on our experience with invalid respondents, to inform other researchers conducting survey research related to genetic syndromes.

求助全文

通过发布文献求助，成功后即可免费获取论文全文。去求助

来源期刊

Ajidd-American Journal on Intellectual and Developmental Disabilities Multiple-

CiteScore

3.10

自引率

4.80%

发文量

期刊介绍： The American Journal on Intellectual and Developmental Disabilities (Print ISSN: 1944–7515; Online ISSN: 1944–7558) is published by the American Association on Intellectual and Developmental Disabilities. It is a scientifi c, scholarly, and archival multidisciplinary journal for reporting original contributions of the highest quality to knowledge of intellectual disabilities, its causes, treatment, and prevention.